Throughout Alex's hospital stay, friends, family, and hospital staff voice their concern for John's and my well-being. It is much appreciated, but it's just not that simple.
I'm not trying to be a martyr when I say that Alex can't step away from his cancer, so it doesn't feel right for us to.
The nurses on the unit are awesome. They are great with Alex. But the truth is, the hospital is not equipped at this point to provide the level of support that Alex needs. We're also willing to concede that he may not need quite as much as we feel he does. This unit is a busy place, and they are not staffed in such a way to provide someone at Alex's bedside 24/7. John and I also would not choose to be anywhere else.
But the real truth of the matter is that this isn't much different than parenting Alex has always been.
Obviously, he has a life threatening illness and we're in a hospital. But Alex has always needed intensive supervision.
You know when your kids reach that point where you feel comfortable letting them get up on Saturday morning, getting their own cereal, and watching tv so you can sleep in for awhile?
We don't.
When Alex is awake, someone in the household must also be awake.
Feeling tired on a Saturday afternoon, or fighting a bad cold, and you just want to take a snooze? Sorry; no such luck.
You know when you reach that point where the kids can let themselves in the house when the bus gets home until you get home from work?
We don't.
Alex has never been home alone, nor can he be. We can't run to the store for a gallon of milk and leave him home alone. Even now, I would barely be able to go out and snow-blow the driveway if Alex were awake in the house alone.
You know how weird it is when your child develops their own social life, and friends come and pick them up for an afternoon or an overnight?
We don't.
Alex has never had plans that we didn't arrange. He didn't go to parties, or sledding with friends, or to the mall on a weekend and leave us home alone.
You know when you finally reached the point where you didn't need to arrange or pay a sitter when you wanted to go out, or had an evening meeting or work commitment?
We don't.
Until Alex moved out, we still had to arrange care for him any time we went out or were not home when he was. We had to arrange care to go visit Jessica when she was in Boston at school, or when we visited her in California. Traveling with Alex is something we have always done, but it has its own challenges and everything must go according to his needs, so we couldn't easily just bring him along every time we visited Jess.
When Alex was small, we had to put his doorknob on his bedroom door backwards so he couldn't get out in the middle of the night. There was a time when we worried he would go right out the front door. "Wandering" by individuals with autism has become quite prominent in the local news. It is a very real problem, and Alex has wondered away from school once and home four times. Twice when he wandered from home he went to a neighbor's house (in both cases, he walked right in - luckily the neighbors in each case knew him) and twice we had to call the police. The last wandering episode occurred when he was only about 12 years old.
This year, Alex has had sutures three times. He needs awake supervision to keep from pulling the sutures out. The catheter that was used to collect his stem cells had to be removed each night and replaced the following day for a total of three days because of the likelihood he would pull it out if we were not able to watch him constantly. Since we still require sleep, that wasn't going to happen.
In many ways, parenting a child with a developmental disability is like have a perpetual toddler in the house. That level of intensity never goes away.
When Alex moved into his group home three years ago, we achieved a freedom we had not experienced since before Jessica was born. We had experienced high intensity parenting for 24 years straight.
I don't tell you this to make you feel sorry for us. We don't feel sorry for ourselves. We've had a great life, and we love our son. We have seen him grow and develop and we appreciate his accomplishments in a way that is only possible when you live through the journey.
I tell you because our lives are different from most people's. Our parenting experience is different from most people's.
And I tell you because what we're experiencing as caregivers is nothing new. This is what we've done for 25 years. I could happily do without worrying if Alex would live or die. And I'm ready to get out of the hospital and be home and be surrounded by our own things. But this kind of being joined-at-the-hip experience, that part is just everyday life for us.
Throughout Alex's childhood, we were able to find great caregivers to help us out. John and I made sure to get occasional date nights. We were able to travel from time to time (more often when he got older). We were able to work and be involved in community groups. We found a balance that worked for us.
In the past year that Alex was sick, he continued to live in his group home. Without them, I would have been off work for a whole year, instead of just the last three months. Alex has become more independent living away from us, and we know he is well cared for with 24/7 awake care. He has overnight awake staff, which is more than he has at home (we haven't figure out how not to sleep).
Today is day 17 in the hospital. John and I eat breakfast in Alex's room with him, and we go down to the cafeteria for lunch and dinner. The nurses watch him when we go. We're usually only gone for about 20 minutes at a time, but it's enough. John and I take turns sleeping here; the other one sleeps in our temporary apartment. One night, we went out to dinner with college friends. We were gone for a couple of hours. Other than that, either one of us or both of us has pretty much been at Alex's side for the past 17 days.
Honestly, you couldn't keep us away. When it's your child, where else would you want to be? And if your child is an adult, but a vulnerable adult, what else would you do? We're not being heroic, we're just being Alex's parents. Our original plan was for me to stay at the hospital alone with Alex, and John to stay at home and work. John couldn't stay away. He arranged to work remotely, and he's also taken time off. Neither one of us were willing to not be here. It's not that we don't think the other one could handle things alone - we know they could - but we need to be here, too. For Alex, but for ourselves. It also is a tremendous help to each of us to do this together. We've always been partners.
Being away and wondering how he is doing is far worse than being at this side. This past year has taught us more than ever what we're made of, and it has brought our family closer. Thirty-Five years ago John and I promised to love each other for better or worse, richer or poorer, in sickness and in health. I guess for us, those aren't just marriage vows, they're family vows.
We're probably not always the best at taking care of ourselves. I don't really know any other way to do things. I do know that when I look back on this year, I won't have any regrets.
Right now, I wouldn't choose to be anywhere else.
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